University of Texas at Austin School of Nursing, Austin, TX, United States of America; Dell Medical School, Department of Neurology, Austin, TX, United States of America.
University of Texas at Austin School of Nursing, Austin, TX, United States of America.
Appl Nurs Res. 2022 Feb;63:151520. doi: 10.1016/j.apnr.2021.151520. Epub 2021 Oct 30.
More biobanks linked to demographic, phenotypic, and clinical data are needed to advance multiple sclerosis (MS) research; however, little is known about biobanking attitudes among persons with MS, broadly, as well as willingness of participants in an existing longitudinal study to donate biospecimens, specifically.
To assess biobanking attitudes in a cohort of MS patients in an ongoing longitudinal study, a new Biobanking Acceptability Scale (BAS) was developed, its reliability and predictive validity tested, and factors that influenced biobanking intent as well as behavior were explored. Analysis included descriptive statistics, factor analysis, Cronbach's α, and Pearson's bivariate correlation coefficients.
In 2018, 227 participants completed the 10-item BAS. Biobanking attitudes were generally positive (BAS total score, M = 38.8 out of 50; SD = 6.7), and most participants expressed willingness to donate hair (87%), saliva (85%), and/or blood (72%). In 2019, 143 participants consented to biobanking and were mailed supplies; 110 individuals provided at least one biospecimen, resulting in 110 saliva samples and 89 hair samples. The 10-item BAS displayed good internal consistency (α = 0.81). Demographic and clinical variables were not significantly associated with BAS score nor actual donation. Total BAS score was related to consent (r = 0.36, p < .001) and to actual donation of hair or saliva samples (r = 0.24, p < .01).
Overall, the participants had positive attitudes toward biobanking; the scale should be assessed in more diverse samples. The BAS predicted biobanking consent, and thus may be a useful measure to identify individuals most likely to donate biospecimens and/or identify potential barriers to biobanking that can be addressed through study design.
为了推进多发性硬化症（MS）的研究，需要更多与人口统计学、表型和临床数据相关的生物库；然而，人们对 MS 患者的生物库态度以及现有纵向研究参与者是否愿意捐献生物样本知之甚少。
为了评估正在进行的纵向研究中的 MS 患者队列中的生物库态度，我们开发了一种新的生物库可接受性量表（BAS），并对其信度和预测效度进行了测试，并探讨了影响生物库意愿和行为的因素。分析包括描述性统计、因子分析、克朗巴赫 α 以及皮尔逊的双变量相关系数。
2018 年，227 名参与者完成了 10 项 BAS。生物库态度普遍较为积极（BAS 总分，50 分中得 38.8 分；标准差=6.7），大多数参与者表示愿意捐献头发（87%）、唾液（85%）和/或血液（72%）。2019 年，143 名参与者同意进行生物库采样并邮寄了采样用品；110 人提供了至少一份生物样本，共获得 110 份唾液样本和 89 份头发样本。10 项 BAS 具有良好的内部一致性（α=0.81）。人口统计学和临床变量与 BAS 评分或实际捐献均无显著相关性。BAS 总分与同意（r=0.36，p<0.001）和头发或唾液样本的实际捐献有关（r=0.24，p<0.01）。
总体而言，参与者对生物库持积极态度；该量表应在更多样化的样本中进行评估。BAS 预测了生物库同意，因此可能是一种有用的方法，可用于识别最有可能捐献生物样本的个体，并确定可能影响生物库的潜在障碍，从而可以通过研究设计加以解决。
